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Showing posts from September, 2013

If I had a Magic Wand....

If I had a magic wand, the first thing I would do is.... to enable my son to communicate..there are so many things I could do if I had a magic wand but after this past week this is what I want..
Its been a difficult week, Roo hasn't been himself at minute he will be fine and the next he would be whimpering, grumpy. We have had a lot of screaming this week, sometimes lasting hours...I do everything I can to try and find out what is causing his distress...often I can finally get to the bottom of it but this week I have felt really helpless.
Despite being on melatonin which normally makes him sleep well we have had a few nights where he will awake crying, screaming or whimpering ...sometimes he wants you to cuddle him and then next min he cant bear to be touch - almost as if touching hurts but at the same time he wants the comfort of my cuddles..I often crawl into my bed at dawn once I manage to get him to sleep but alas within the hour he awakes again but full of energy...oh …

Respite - Yay or Nay?

Every parent knows how much hard work a child can be, but being a parent of a special needs child is harder as they need a lot more care & supervision than that of a child of their age. As Roo gets older , more mobile we are finding that we cannot leave him at any point... he needs constant supervision and care. While he is mobile he does have issues as he has poor balance, low muscle tone, possible hyper mobility in joints & falls a lot. He cannot run, jump or walk for long...when outside he needs to be in a buggy for his safety as he has no danger awareness & he is physically unable to walk much otherwise he is in pain the next day from doing too much. He cannot walk up and down stairs but he can crawl upstairs as long as someone is behind him to catch him in case he loses his balance...Majority of the time he has to be carried & he is a big boy - almost 3 yrs old and nearly 16kg so its a killer on your back sometimes!!
He thinks nothing of reaching up onto the work…